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Old 05-02-2006, 06:16 AM   #1
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Leela_C HB User
Lupus Anticoagulant

Hi there. I posted on the lupus board, and someone suggested I come over to this board. My doctor told me I tested positive for lupus anticoagulant. She acted like it was no big deal. She told me to quit smoking and get off of the birth control pill. I have been trying to quit smoking by tapering down, so that I planned on doing anyway. However, I have PCOS, so getting off the pill is not that easy for me. I am very confused. I spent most of my day yesterday online trying to find more information about this and kept coming across APS information. That confused me even more. Here are my test results:

LUPUS ANTICOAGULANT - DETECTED
PTT-LA - 73 H (range <=40 s)
DRVVT SCREEN - 55 H (range <=42 s)
PHOSPHOLIPID NEUTRALIZATION - Confirmed
HEXAGONAL PHASE NEUTRALIZATION - Not Confirmed
PARTIAL THROMBOPLASTIN TIME, ACTIVATED - 28 (range 22-36 seconds)
PROTHROMBIN TIME WITH INR - 1.0 (range 0.9-1.1)
PROTHROMBIN TIME - 9.9 (RANGE 9.0-11.5 seconds)
CARDIOLIPIN ANTIBODY SCREEN - EQUIVOCAL
ANA SCREEN - NEGATIVE
CARDIOLIPIN IGA AB <10 (range <10=normal)
CARDIOLIPIN IGG AB <10 (range <10=normal)
CARDIOLIPIN IGM AB <10 (range <10=normal)

The items in bold are those that the lab results flagged as abnormal.

Like I said I am very confused. Do I have APS? My doctor said she didn't want to treat me because nothing has happened. I have never had any clotting problems that I know of. I feel like I am just a walking time bomb. Should I be taking aspirin? I don't want to just sit around and wait to develop a blood clot.

Does anyone out there have any answers, or advice? I am very worried about this.

Thanks!

 
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Old 05-02-2006, 03:33 PM   #2
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Ali04 HB User
Re: Lupus Anticoagulant

there is a new test now.
acutally the old cardiolipin antibody and lupus anticoagulant test prove more reliable when used with this other test.
the beta 2 glycoprotein i antibodies.
they are beta 2 glycoprotein igg, igm, iga

they give a clearer picture.

they do not treat the disorder until you have had a clotting event. if you feel comfortable taking a baby asprin, you should talk to the dr. i dont think they will have a problem with it. as for smoking, i dont have to lecture you. you know the risks.

stay safe,
ali

 
Old 05-03-2006, 06:24 PM   #3
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kris1182 HB User
Re: Lupus Anticoagulant

I have lupus anticoagulant too. I am, however, on coumadin--I have had a clot. I was also on birth control pills & that was the first thing they told me to do-quit taking them. There are a few options for birth control that my doctor has told me I can try. Depo Provera and Mirena. You might want to ask your doctor about those.

 
Old 05-04-2006, 06:09 AM   #4
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Leela_C HB User
Re: Lupus Anticoagulant

Thank you for your responses!

Ali - I will talk to my doctor about getting those tests. Thank you for mentioning them. And thanks for not lecturing me on the smoking thing. I will be quitting very soon, especially now with all of this going on.

Kris - where was your clot and how did you know you had it? I am a very anxious person by nature and I feel like I am just sitting around waiting for a clot to happen. My gyno put me on a progestin only pill and said that was safe for me. I sure hope she is right! I have to be on something because I have polycystic ovaries.

 
Old 05-05-2006, 09:45 AM   #5
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Stacia HB UserStacia HB User
Re: Lupus Anticoagulant

Hi Leela_C~

My husband tested positive for Lupus Anticoagulant and he has APS. He is on the thinners because he had a stroke when he was 32. The thinners area very serious drug, so don't worry about not being on them. I know that the doc told us the same thing. They will not treat you unless you have an episode. You don't want to be on the meds if you don't have to. You may NEVER have an episode. Some people don't. And the meds are kinda like birth control, 99% effective.

Take care and try not to live in fear. I did that for too long and now I am living and having fun again.

Stacia

 
Old 05-05-2006, 06:38 PM   #6
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kris1182 HB User
Re: Lupus Anticoagulant

Hi Leela,

I actually had a "mini-stroke" when I was 25. I woke up with a horrible headache one morning and had a difficult time talking and comprehending what was going on around me. It was really scary, and they didn't actually think at first that it was a stroke until they tested me for what seems like a thousand different things! I was on warfarin for a few years, then went off them for 2 years. I went on the depo shot for birth control and had another clot shortly after (in my calf). My hemotologist thinks the shot is to blame, but my gyno says no way. Either way, I'm back on the warfarin and off the depo.

I do know someone who has lupus anticoagulant and she is not on any medications for it either. I can understand your nervousness, but just make sure you listen to your body!

 
Old 07-02-2006, 07:53 AM   #7
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lupielu HB User
Re: Lupus Anticoagulant

Hiya,
I was having all kinds of problems before I tested positive for the Lupus Anticoagulant. Some of which were strange numbness and tingling on the left side of my body. When I finally tested two or three times for the LA my rheumatologist started me on an aspirin a day. I was diagnosed with Antiphisioploid Syndrome (Hughes Syndrome). I still continued to have these episodes so she changed my med to plavix. But, they still continued. She added aspirin to the plavix so I took both. At this time I was still having what she called TIA's (mini strokes). Then I had a stroke at the age of 44. While in the hospital, after many tests, coumadin was added to my meds. I had to remain in the hospital until they got my coumadin (INR) levels therapeutic. While this was happening, I was given IV heparin to protect me from any further clotting episodes. I also had MRIs and CAT scans done on my brain. Lesions were evident. This is very common for those with APS. I have been on coumadin (actually the generic form Jantoven) for about 4 years now.

I have my INR (Coumadin) levels monitored regularly. My local hospital has an anticoagulation center. I also have a monitor at home so I can monitor myself when I feel symptoms come on. Symptoms such as a low or high INR.

Coumadin is not as dangerous as it is made out to be. You may be told that it was used as a pesticide during WWII. And, it was. It was used to kill off rats. But, take into consideration that yes, the rats bled to death because of this. But, they didn't have their levels monitored. It is very very important to have your levels monitored while on coumadin. A reliable physician will make sure that this happens. Some doctors do it through a blood draw. Some will send you to an anticoagulation clinic where they will do a finger stick and have your levels within moments. That is what I do.

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Old 07-17-2006, 01:56 PM   #8
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pagefreeman HB User
Re: Lupus Anticoagulant

I am recently new to all of this.

I woke up on Feb 6th with a pain in my heel. It rapidly got worse during the day, to were I could hardly walk. I went to my dr. I went to the emergancy room. Nobody could tell me what was going on. During the next month I was in so much pain that I lost 26lbs, my 13 year old son would have to carry me back to bed. I am a big women. Finally I was dianosed with a DVT in my upper right leg. I was told that my whole vien from my hip to my knee is blocked. I had my labs done by a vasculor surgeon and Lupus anticoagulant has been detected. Along with a R506Q mutation in the Factor V gene.

Someone said that I have a form of Lupus and some say I don't. I have not had it confirmed nor denied by any of my dr.(s) on what is going on. I was wondering if someone could help me out on what their experience is with the Lupus anticoagulant and what their dr has told them. I was also told that because I was on the patch for birth control a couple of years ago that is why I have the DVT.


Last edited by pagefreeman; 07-17-2006 at 01:59 PM.

 
Old 07-17-2006, 02:25 PM   #9
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Leela_C HB User
Re: Lupus Anticoagulant

I actually went to my doctor last week because my leg has been hurting and I was scared it was a clot. (I'm kind of a hypochondriac anyway, so having this condition certainly doesn't help!!!) She told me that I only need to worry about blood clots if I want to get pregnant. She said that the only time you have to worry about the lupus anticoagulant is when your estrogen is high - like taking oral contraceptives and during pregnancy. I hope she is right and I am trusting that she is because if I don't all I will do is worry about this. I have been off the pill ever since I found out about this.

I have read that it is NOT a form of lupus. The name is really confusing. There are many sites out there about this if you search on it.

I think that Factor V gene is something different altogether. I saw it during some of my searches about LA. I can't really help you with that but I think there are some posts on this board about it.

Thanks everyone for your posts. I hope that those of you who have had clots are doing OK.

 
Old 07-17-2006, 04:42 PM   #10
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Stacia HB UserStacia HB User
Re: Lupus Anticoagulant

Hi pagefreeman!

My husband has APS. I was told when he was diagnosed that Lupus Anticoagulant is called "lupus" because waaaaaaaaaay back in the beginning they were seeing a trend with people who have lupus and this disease. Hence, the name remains with Lupus in it because of earlier findings, but does not necessarily mean you have Lupus.

I hope that makes sense.

Stacia

 
Old 07-18-2006, 10:49 PM   #11
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csavage HB User
Re: Lupus Anticoagulant

Leela C - You do not have to be pregnant or on birth control pills to have a clot if you have the lupus anticoagulant antibody - just think, there are men who have this and it is safe to say that none of them are pregnant OR on birth control (estrogen)! Although I'm female, I was 47 when I had my blood clots and I was definitely not pregnant nor on estrogen! The best defense against developing future blood clots are coumadin or heparin. I must be on coumadin for the rest of my life. And although this treatment is not 100% foolproof, it is about the best the medical community has to offer. Take care and good luck!

Csavage

 
Old 07-19-2006, 07:42 AM   #12
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Leela_C HB User
Re: Lupus Anticoagulant

CSavage - you are the first person that has posted on here about having a clot not related to being on birth control or other hormones. My doctor will not treat me since I haven't had a clot. I will definitely print out your message and show it to her the next time I see her. Now you have me worried again. I thought she knew what she was talking about but I guess not. Thanks for the info.

 
Old 07-20-2006, 04:28 PM   #13
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Re: Lupus Anticoagulant

I was diagnosed 7 years with APS. In some people who have this, it may never actually come to anything as a clot but will only effect you during pregnancy (causes miscarriage but can be treated is now about 80% successful if I remember correctly).

I have never had a clot myself and have 2 children now after having 5 miscarriages. Anyone who has this detected is recommended to take an aspirin as it is a precaution and can stop some symptons and possibly prevent a stroke but not in all cases. I attend the Lupus unit in London as I have numerous other symptons with it that the aspirin isn't working with.

The aspirin is recommended (strongly) and if things occur that you find odd that happen often. Tell your gp as you may need further treatment at some point in your life.

There are a number of books available for sale to help you with more information on this also and to try and put your mind at rest a little.

 
Old 07-28-2006, 02:23 PM   #14
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cieside HB User
Talking Re: Lupus Anticoagulant

Okay, after reading all of this I thought I might have something to tell you all...I have had Lupus since 1991. I also have the lupus anticoagulant. I have had 100's of clots since then, I have had them in both legs, and in my lungs as well....I now have a filter that is completely clogged with clots and they are trying to figure out how to fix it, because both of my legs have swollen to about 3 times their sizes. So any of you that have questions about this fun disease, go ahead and ask, because there isn't anything I haven't been thru and can probably answer any of your questions. The way you can tell if you have a clot is very easy.....You cannot see it you can only feel it, and I don't mean literally....it is like you can take your finger and pinpoint where the pain is in your leg but you don't see anything there. That is when you know you have a deep vein thrombo. If you feel warmth on your leg and it is red then you probably have a clot on the outside of your vein....those are not dangerous...Just get off your feet and keep you legs elevated for a few days....it should go away without any more problems...As far as coumadin goes, I have been on it since 1991 and yes I hate it as much as the rats do....and to be honest with I have clots whether I am on it or not, but you cannot convince the drs. to stop it...and they cannot regulate me, but they still keep me on it anyway... it keeps them out of trouble. Anyway..let me know if you all have any questions this old lady can answer...I have survived quite a bit so far...later gang.
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